Ange76

Hi all,
I've been from one dr to another to another...and they each have something different to say! It went from epilepsy to fibromyalgia to photophobia then severe depression and now Parkinson's Disease. So far, the only thing that seems to fit is Parkinson's! My family dr is the one who came to that conclusion though so I'm wondering what you all had to say about it!
Here are my symptoms: Prior to starting medication I have severe pain on the left side of my body, a horrible stomach tightening feeling, severe stuttering, neck pain that was just awful, a very bad limp (left side), severe headaches, seizures (most petite mal which my family dr. now believes could have been linked to PD), tremors (on both sides of the body) and severe sensitivity to light (would develop vertigo like symptoms). I also had a very hard time sleeping at night (both going to sleep and staying asleep). I could not bend my left knee of it would almost freeze in that position and hurt horribly to try to straighten again! I also had a tingling on the left side of my brain (wasn't scalp..it was definately deeper) that happened at least 4-5 times per day! End of January when my family dr came to the conclusion of PD he started me on Mirapex and I had almost immediate improvement. It took me about a month to adjust to it and things were up and down but my pain and tremors were most reduced right away. I've now been on the mirapex for about 2 months and doing well for the most part. But...I still have my good and bad days...the symptoms I still struggle with are....incontinence, constipation, speech indifferences (one day it might be stuttering, the next sounding like a mouth full of marbles), some days I talk very softly, pain but not nearly what it was before, sensitivity to light (but again, not as bad as it was), a feeling of my tongue curling inside my mouth when inactive, a loss for answers to simple things (forgetting how to do things I've done a million times before...like...how to put the soap in the washer, opening a gallon of milk, which button to push to make toast, etc.) and a lot of instability (running into things while walking) as well as writting changes from one day to the next and the tendancy for increased tremors when doing intricate tasks (writting, picking up small items, etc.). I also notice that I can't open my mouth as wide on some days and I tend to choke a lot more often, as well as gagging on things. I had all these things before the meds as well but as you can see, some things stuck around while others went away! I also have no reflexes on my left foot/leg and have reduced reflexes in my left arm and hand (as well as reduced sense of touch on the left side of my face). When given the 'pull test' (they pull you back from behind by your shoulders)...failed miserably....they said I didn't even attempt to put a foot back to catch myself! My husband says that I have difficulty rolling over in bed and some days I can't hardly get up out of my chair without struggling (or with help). Getting up out of a chair without using my arms is almost impossible on most any day.
It seems like these come in waves....sometimes I'll notice they start off slowly and increase (in both intensity and number of symptoms) and then sometimes they come on quick and strong. Stress really increases everything fast!
I take .75mg of Mirapex daily (throughout the day) and take Dilantin for the seizures as well. I don't handle medications well and am very sensitive to them so even smaller doses can have a big affect on me in the beginning!
I have found I have the typical side effects of the Mirapex (severe sleepiness) but nothing severe! I also notice that if I miss a dose of my Mirapex my speech is affected within hours (that's my reminder).
Just wondering what you all have to think about all this! Please send me your thoughts!
Thanks so much for your time!, Ange

P.S....in case it makes a difference....I am a 32 year old woman and my 12 year old daughter was diagnosed with Dystonia and a neuropathy while my 5 year old was diagnosed with Erythromelalgia 2 years ago. They are now questioning whether or not these conditions could be linked to Parkinson's as well. I've had a spinal tap, MRI and cat scan, EEG and EKG done within the past year and all showed nothing...not even for the seizures...yet they diagnosed me with epilepsy! All bloodwork has come back within the proper levels but I do have a heart murmur that they want me to see the heart hospital about!